What I want you to know about being a long-term caregiver

What I Want You to Know is a seriesof
reader submissions. It is an attempt to allow people to tell their
personal stories, in the hopes of bringing greater compassion to the
unique issues each of us face. If you would like to submit a story to
this series, click here. Today’s guest post is by Leona.

My grandmother loved to drive. Her left leg had been paralyzed by polio when she was a young mother, and she walked with a cane from the age of 30 on. Driving was the only time she could really move freely, and she expressed to me more than once that she dreaded the thought of someday having her license revoked due to age or infirmity. Even more, she was terrified of progressing from walking with a cane to being stuck in a wheelchair.

In 2004, she had a stroke that paralyzed her right side, bringing all of these fears to fruition. Suddenly she couldn’t walk at all, she certainly couldn’t drive, and because she was dominantly right handed, she couldn’t write anymore. She’d been living with my mom for about a year when it happened, fortuitously set up in a sunny bedroom with a handicapped-accessible en suite bathroom, and she desperately didn’t want to be put into a home or facility. She was 83 when she had the stroke, and she didn’t expect to live long afterwards, so she opted out of a lot of the physical therapy she might otherwise have done, and my family fell into a routine of caring for her full time.

But grandma didn’t die. She lived for 12 more years, rarely leaving the house, alternating between her little love seat, her wheelchair and her bed. My family lifted her on and off the toilet, prepared and delivered her meals, washed all of her laundry, bathed and dressed her, trimmed her hair and nails and kept her company for hours at a time, every day.

During this time, at least two of the four kids in my family lived with mom to help with grandma. I was the most free, spending years away from home in the bay area, in Oregon and in LA. When my sister got engaged in 2012, I moved back in so she could move out. For the last four-plus years of her life, I was my grandmother’s nurse.

My sister says (correctly) that she did it longer, but I had the more intense experience. During my tenure, grandma would have occasional spells where she would shake uncontrollably and seem about to pass on. We would take turns holding her hand. We would pray with her. She would calm down, and she would bounce back.

I’d been doing her baths for a couple of years before moving back in, and I’d taken over her hair and nails at the same time. I tried to elevate these acts of grooming into acts of love, understanding that these were some of the most sustained periods of loving touch grandma experienced. We would chat while I cared for her, and I took pride in the quality of my care.

In September of 2015, grandma had another stroke. She was sitting on the toilet while my youngest brother and I prepared her for bed, and we had to hold her in place while the stroke raged through her. Once she calmed down, we moved her to her bed. The next day, it was clear that the speech aphasia that had passed quickly with the first stroke, and the occasional mini-strokes she’d experienced in the years in between, was not passing. She would babble incoherently at us, obviously unaware that the words in her mind were not making it to her mouth.

She was more physically limited, too. Overnight she went from being able to feed herself pretty well to making a huge mess with anything other than finger foods. So her diet changed to things she could manage.

In the couple of days after this stroke, I called her Housecall Doctor and asked him to come evaluate her for hospice. We needed help, and we wanted the security of having outside experts to call if anything happened and to vouch for the quality of care grandma was receiving. He came quickly, admitted her to hospice, and after 11 ½ years of our family keeping her going on our own, we suddenly had people coming in and out of the house to help with her every day. A lovely nurse took over her showers, others came to check on her vital signs and guide me through becoming a whiz at wound care.

We had two major concerns during this period: what if she graduated from hospice without regaining her speech, and what if this went on forever? Our logical minds knew these things were unlikely, but in the first month we had all of her loved ones come to say goodbye to her, and it improved her spirits so much that she bounced back some.

For the next seven months, my mom, brother and I were all in a constant state of high alert. Grandma began crying all the time. She would wake me in the night with it. She would wake me an hour before my alarm. She would cry loudly while I was trying to work in my home office, which adjoined her bedroom. She would cry if we left her alone too long. She would cry if we brought her to sit with us for too long.

We tried to place her in hospice respite for a few days, but because of the unique mix of physical issues she was dealing with and the fact that she had been refusing medication (sometimes throwing pills at me when I handed them to her), nobody would take her.

People would ask if we’d considered paying for someone to come in and take care of her, but the care she wanted was for someone to sit next to her and stare into her eyes while holding her hand. We couldn’t afford to pay someone to do that all day, just to keep her from crying, and we couldn’t stop our lives to do only that, so we started working with the hospice doctor and nurses to find medications that would help keep her calmer. Some of them made it so much worse. None of them seemed to help. I felt so guilty about medicating her at all. When she’d reach a tipping point of enough medication in her system and being exhausted from crying, she would pass out and we could rest. We were all so tired, and I felt like I was losing it.

Finally, in April, during this new era of increasing amounts of daily medication delivered in timed doses round the clock, she started to exhibit real signs of decline. Her ultimate passing came on relatively quickly, considering how long she’d survived every bump since the first stroke. And then one day, she was gone.

I was alone with her when it happened. For days she’d been breathing loudly with a raspy gargle, as though she was drowning in her bed. We’d been instructed to stop feeding her or giving her anything to drink because she no longer had the strength to swallow. She was 95 and had a “do not resuscitate” order. She wasted away loudly for three days. And then she was eerily silent. I had already asked a nurse to come look in on her because of how loudly she was breathing, and when she went quiet I called again to report that I thought she’d passed away. I went and looked at her for a long time, unsure of how I felt or what I was hoping to see.

And then we were free. She was released from her broken body, and we were released from the role of caregivers. That night, my mom and brother and I went out to dinner together and left the house empty for the first time in 12 years. I stopped to lock the door on our way to the car, and my mom was surprised that I even knew where my key was because we hadn’t needed to use them for so long.